Abstract Background Conventional inflammatory bowel disease (IBD) education remains primarily didactic, insufficiently addressing the motivational and affective mechanisms that sustain adaptive self-management. Anchored in the Patient Health Engagement (PHE) model, this study co-developed and optimised ENGAGE-IBD, a psychologically grounded guide designed to facilitate patients’ progression from emotional disorientation to proactive partnership and preventive health orientation. Methods Employing a Participatory Action Research framework, Phase 1 systematically mapped extant IBD resources for scientific integrity and psychological congruence, followed by two co-development workshops with patient representatives, an advocate, and a dietitian to refine conceptual structure, tone, and clinical fidelity. Phase 2 involved structured online interviews with patients (n = 8), high-risk individuals (n = 2), and clinicians (n = 13) from ten countries. Participants evaluated clarity and usefulness across nine engagement domains using 10-point scales and provided qualitative feedback. Descriptive statistics summarised quantitative data; thematic synthesis of narrative responses guided iterative optimisation. Results Stakeholders demonstrated uniformly high ratings for clarity and usefulness, affirming the guide’s comprehensibility and clinical applicability. Patients prioritised sections on treatment adherence, symptom interpretation, and goal setting, while clinicians emphasised emotional well-being and shared decision-making. Thematic analyses revealed endorsement of the guide’s empathetic communication, biopsychosocial integration of emotion, diet, and adherence, explicit delineation of multidisciplinary roles—especially IBD nursing—and consistency with contemporary nutritional evidence. The final ENGAGE-IBD guide comprises nine interlocking domains—Educate, Navigate, Gather, Adhere, Get active, Engage, Implement, Build, and Define—supported by pragmatic instruments including symptom trackers, communication checklists, and SMARTER goal-setting modules. Conclusion Through participatory co-design, the PHE model was effectively operationalised into a theoretically rigorous yet practice-oriented framework that redefines IBD education as an engagement-driven, psychologically adaptive process. ENGAGE-IBD constitutes a scalable translational interface between behavioural science and gastroenterology, offering a clinically deployable model for integrated care and a conceptual foundation for precision prevention among at-risk populations. Conflict of interest: Dr. Usta, Dilara: Received a research grant from the European Union’s Horizon 2022 Program (project number: 101095470). Costa Pereira, Andresa: Received a research grant from the European Union’s Horizon 2024 Program (project number: 101156542). Acampora, Marta: No conflict of interest Savarese, Mariarosaria: No conflict of interest De Rocchis, Maria Stella: Received funding from AbbVie, Agomab, Alfasigma, Boehringer Ingelheim, Bristol Myers Squibb (BMS), CELLTRION, MSD, Galapagos, Janssen Immunology Pharmaceutical, Lilly, Novartis, Pfizer, Sandoz, Takeda, and F. Hoffmann-La Roche Ltd. Avedano, Luisa: Received funding from AbbVie, Agomab, Alfasigma, Boehringer Ingelheim, Bristol Myers Squibb (BMS), CELLTRION, MSD, Galapagos, Janssen Immunology Pharmaceutical, Lilly, Novartis, Pfizer, Sandoz, Takeda, and F. Hoffmann-La Roche Ltd. Graffigna, Guendalina: Received research grants from Chiesi, Alexion, Lundbeck, Sanofi, and she has been a speaker for Sanofi, Roche Diabetes Care, Merck Serono.
Usta et al. (Thu,) studied this question.